Guest guest Posted August 20, 2004 Report Share Posted August 20, 2004 My son was diagnosed with RSS yesterday at New York Prebyterian Hospital. I would like to join this group and learn about all of your experience, treatment options etc. I read a bunch of threads from this week and noticed a lot of you are in the New York area and see a Dr. H. There was also a discussion about a " convention " . Any local info would be really helpful. We live in NJ. I work in NJ and my husband works in NYC. My son is 2.5 years old. He is a twin (like many others in this group - any research on that?). He weighs 20 lbs and is 32 " tall. We have been to a number of specialists. He was born at 28 weeks gestation and has congenital hypothyroidism. So, we had to eliminate many other diagnoses that could have been caused by prematurity and hypothyroidism before reaching the RSS diagnosis. We have been recommended GHT, but am not sure if insurance will cover it. What has all of your experience been? Thank you in advance for your responses. -Malathi Quote Link to comment Share on other sites More sharing options...
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